Remission and recovery from treatment

Treatment for leukaemia aims to achieve remission. Remission means that no leukaemic cells can be found in the blood or bone marrow and the bone marrow is working normally again. In people treated for acute leukaemia, remission may last many years, and then they are considered cured. Chronic lymphocytic leukaemia (CLL) is still incurable but treatment can relieve symptoms and induce long-lasting remissions. Long-term treatment with tyrosine kinase inhibitors, such as imatinib, can control the symptoms of chronic myeloid leukaemia (CML) for many years, or possibly for ever, in most people.

Some people with acute leukaemia were told they had achieved remission after their first course of chemotherapy, but treatment was continued to destroy any remaining leukaemic cells and give the best chance of a long-lasting remission or cure. Deb’s acute myeloid leukaemia (AML) went into remission after each course of chemotherapy but his remission did not last until the start of the next. After five courses he had a stem cell transplant, which produced a lasting remission.

Brian is a Research Consultant in the voluntary sector. He is married and has two adult children. Ethnic background: White British.

So have you actually been told you are in remission?

I was told I was in remission, and this is very interesting this is. After the first cycle I was told I was in remission because when they did my counts, they did a bone marrow biopsy after the first cycle - this might be of interest to people- I had something like fifty per cent leukaemic cells in my bone marrow when they did the first bone marrow biopsy; by the time I’d had the first cycle it was less than three per cent. Morphologically - the consultant used this word - he said I was in remission. I mean they basically said, ‘If you came in with that we would just say you were.’ And then, looking at the fantastic counts I had, they would have said I was in full remission at that point. They carried on doing the next three cycles because it’s belt and braces. I mean they really said, ‘We need to consolidate what we’ve done. We reinforce what we’ve done in various ways, and best practice is you have four cycles. The fact that you’ve responded so well on the first one is fantastic news, it’s very good. It means that there’s more chance that the second, third and fourth cycle will be good.’

I did wonder at times whether or not I needed four cycles having had such a good response in the first cycle, particularly when I discovered my counts were recovering so badly, so slowly, I wondered, ‘Well, did I really need the second cycle? Maybe I should have gone straight to the third one’, which was a different combination of drugs.

And it did go through my mind, but the consultant was adamant, ‘No, four cycles it is.’ So you can’t fight the experts.

People reacted in different ways to being told they were in remission or that they could go home from hospital. Most had been happy, delighted or ‘over the moon’. Some were thankful and looked forward to the future, others were surprised. Gilly said that it hadn’t been her time to die, but she had come close to it. Julie cried with relief when told her AML was in remission after one course of chemotherapy, assuming that she would need no further treatment. However, she had three more courses of chemotherapy and a stem cell transplant. Jim had cried on returning home after a long hospital stay. Neil said it had been important for him to walk out of the hospital door that he had entered through. Marilyn was proud that she had coped with her oral chemotherapy for CLL and achieved remission.

Julie is a clerical worker in the NHS. She is married with no children. Ethnic background: White British.

But by about the end of June, beginning of July, so it had been six months I’d been in London completely. And they came to me and they said to me, ‘Your blood has picked up enough and we’re going to let you go home.’ And I was like, ‘Really?’ And they said, ‘Yeah.’ And I was like, ‘Ooooh’ And I said, ‘And what happens now?’ They said, ‘Well you’ll come back as an outpatient.’ And I was like, ‘Really?’ And they were like, ‘Yeah.’ And I was like, ‘God.’ I never, I’d dreamt of that day, clearly, and I just never thought it would come. I really, really didn’t think it, I’d been so unwell through that transplant I really didn’t think I was going to make it. My parents were called up God knows how many times and I really thought this day is never going to come.

And I thought to myself, ‘Wow. I’m going to go home.’ And then again the nerves would kick in, ‘What happens if I’m ill? What happens if it comes back? Oh my God. Oh my God. What am I going to do? What am I going to do? What am I going to do?’ But they said, ‘No, listen, go home, enjoy it, and come back and see us’. It was then every week, and it will be for quite some time. ‘It will be every week and we’ll take it from there’.

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Age at interview:

64

Sex:

Male

Age at diagnosis:

59

Background:

Luke is a retired journalist with four children.

And the hairy cell really it’s the white cells become hairy there, it’s sort of a funny shape and spread too much, so the only thing is to try and kill those off and get back to normal. But, as I say, after six weeks he did a final check and said, ‘That’s it. No need to come back.’ Took me totally by surprise but he said, ‘Yes it is amazing, as a drug it really is good.’

That was basically it. I mean I’ve had lots of other problems but this one certainly surprised me how easily it was cured. And nowadays I try, if anyone mentions it, I always try and say, ‘Well’, if they’ve got something much worse, I’ll say, ‘Well, you never know’, just give them an idea of what my case was so that it’s not all negative and gloom and doom.

Other people reacted more cautiously to the news, fearing that the leukaemia might recur. John had adopted a ‘wait and see’ approach. One man said his doctors kept moving the target of how much time should pass before declaring his stem cell transplant a success. First he was aiming for three or four weeks, then 100 days, then 200 days, then a year, and so on. Another man said that his doctors would never say he was cured but that the longer he stayed in remission the better it was.

Recovery from treatment could be a slow and lengthy process, particularly after a stem cell transplant. Some said it had taken longer than they expected for their blood counts to return to normal and tried to avoid catching infections during this time (see ‘Infections and other treatment complications’). At first, fatigue and weakness meant that some people could do little for themselves and slept a lot. Many restored their weight, strength and fitness by taking gentle exercise at first and gradually increasing their activity. Ian got a dog so he would have to go for walks. People who had spent time in intensive care had to learn to walk again, as did Elsa each time she had a stroke. As well as looking after herself, Dianne had to care for her husband who'd had heart surgery during her chemotherapy.

Gilly is a therapist and yoga teacher. She has no children. Ethnic background: Irish/American / Turkish/English.

The first two months I really stayed in the house, I was very weak, very tired and just actually getting used to really living here, just because I mean often, for instance, getting up in the morning I could take up to two hours just to move from the bedroom to the bathroom. Ordinary things like having a shower, then working out what to eat, going and lying on the sofa. Everything was very slow. I was physically very weak. I was falling a lot. I have to say that there was no physio or rehabilitation and I seriously damaged both my arms by very serious falls in that period of time, which I was actually very angry about because I’d kept myself very good and the local authority just didn’t come in on day one.

So there was a lot of actual getting used to being back in the house, of, ‘Do I put on the washing? No, I can’t. I’m exhausted. Go and lie down. Can I make a cup of tea? Yes, I can. No I can’t.’ Maybe I’d be up for two hours in the morning then I’d rest, then I’d sleep in the afternoon another two hours then go back to bed. But slowly what happened it began to evolve. I’d think of a little project to do, maybe open up the back door and go and stroke the cat out in the back garden and then come back in again. And then I began to, I could barely walk, so I began to kind of do little walks from the house to the car. And then a friend would come out with me and we’d drive round the block.

So it was a really gentle reintroduction back into life.

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Age at interview:

40

Sex:

Male

Age at diagnosis:

38

Background:

Deb is a business consultant. He is married with two children aged 10. Ethnic background: Indian.

And I was still then I was very, very weak so I requested my hospital, the consultant to refer me to a physiotherapist so that I can build some strength in my lost muscles. They helped me with that. I went back to my local hospital, started undergoing a programme under this physiotherapist. The physiotherapist was also very nice. After some time I joined the local gymnasium, went for swimming and all this. It almost, it took me about six months, about a year after the transplant to regain my strength where I could start working as a normal person.

People enjoyed gradually resuming normal day-to-day activities, hobbies and sports, and spending time with friends and family. Some travelled abroad, but at first only to destinations that didn’t require inoculations. Several eventually regained their previous level of fitness, got their life back and could plan their future. One woman returned to full-time education after achieving remission from her CML on imatinib (Glivec). Some returned to work (see ‘Work and daily life’).

Kelly is a sales executive. She is married with two children aged 12 and 6. Ethnic background: White British.

What was it like getting back into your job afterwards?

Great because you felt normal - and I know that’s a horrible word but that’s the only way to describe it - you felt normal, and taking the kids to school. One thing I really like doing, especially in the summer, I love hanging washing out. I don’t know why. I don’t like getting it in or ironing it but I just like hanging it out. And cooking as well, because I like to cook, and you have your food cooked for you while you’re in hospital. And then because I was ill I didn’t really have much energy to do much cooking so I just let my mum do it and my husband. But I like cooking so that was nice. Bored of it now though.

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Age at interview:

60

Sex:

Male

Age at diagnosis:

54

Background:

Michael is a semi-retired university lecturer. He is married with 3 children aged 15, 17 and 25. Ethnic background: White British.

The other issue is about self-image and being diagnosed with the disease and how you can help repair it. And what was very important for me was to try and get back to the level of fitness that I had beforehand. And okay, I’ve got the disease, I may or might have it forever, it may well come back, but if I can do everything that I was able to do, albeit age takes its toll anyway. And for me what was very important was running, as I used to jog and run before. I’ve had to stop and intermittently start it again. And over the last year, yeah, it’s almost a year now, I’ve started to run regularly again and gradually got a bit faster and faster and felt fitter and fitter. And that has been very, very, very important to my sense of well-being and my self-image. And of course it’s not for everybody, I know that, but I think it is important to try and go back to all the things that you used to do and enjoy.

And we’ve also obviously had to curtail the travelling for a while, particularly when I was neutropenic, but that is another thing now we’re able to go for. And one of the things I hadn’t mentioned, that you’ll come across, is that everybody who has a stem cell transplant has to start all their inoculations again, so you have all your childhood inoculations, MMR and all the rest of it, again. And of course you shouldn’t really travel until you’ve had those done. So there’s just two extra points, thoughts that occurred to me.

Despite being in remission from the leukaemia, other people continued to have related health problems. Some people who had received a donor stem cell transplant, later developed a complication called graft-versus-host-disease (GVHD). Symptoms can vary in severity and include a rash, diarrhoea and vomiting, or jaundice. Common treatments include immunosuppressive drugs and steroids, but some cases may be treated with phototherapy involving exposure of the skin or the white blood cells to ultraviolet light.

Professor Khwaja is a consultant haematologist at University College Hospital, London and professor of haematology at University College London. He is an expert in the diagnosis and treatment of haematological malignancies especially acute leukaemia's.

So one of the complications that can occur with an allogeneic stem cell transplant is this condition called graft-versus-host-disease. And this arises because when the new stem cells seed and take root in the patient a new immune system develops. Immune systems are there to recognise things that are foreign to them and to attack them, and because the new immune system doesn’t recognise some of the other parts of the patient’s body as belonging to the same immune system, they can attack those. And this can give complications such as liver damage, problems with the gut and with the skin. This is a complication that can be treated but it requires further immune suppression drugs to be given.

Now, there is a flip side to graft-versus-host-disease which is potentially of benefit, which is that any leukaemia cells that are left in the patient that weren’t killed off by the chemotherapy and the radiotherapy, these may also be recognised as foreign by the new immune system. So the new immune system recognises the leukaemia cells as not belonging to them and therefore can attack them and kill them. And in some kinds of leukaemia, for example for chronic myeloid leukaemia, this is a very powerful effect and it is sometimes called graft-versus-leukaemia-effect.

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Age at interview:

40

Sex:

Female

Age at diagnosis:

33

Background:

Ann is a civil servant. She is divorced with no children. Ethnic background' White British.

Okay, tell me about graft-versus-host-disease. You said it was quite a bad case.

Yeah.

What are the symptoms you get with it?

With me, when I left hospital after my transplant I was actually given an information sheet with the symptoms to look for, and it was to do with you could have problems with your gut or your liver were the most common. I started off, I was actually away on holiday, I went to America on holiday not long after my transplant, possibly rather stupidly, and I started with a very red, burning rash on my legs and my body, and it sort of spread to most of my body whilst I was away on holiday. But it was in the last few days so I didn’t worry about it. I just kept putting moisturising cream on and having baths with oily stuff that I’d actually taken with me because I did get a lot of dry skin following the transplant.

And I went, I got myself an appointment at the hospital, went down to see them and they just immediately told me what it was, and the remedy was to up my anti-rejection medication until it was under control. Also steroids were quite widely used to control it as well. And then it took quite a while to get the balance between the anti-rejection drugs and controlling the rash that was all over my body at the time. And now I just get little bits of eczema. Usually it’s round my neck, which is a classic graft-versus-host-disease place to get it, it was all sort of round your neck area.

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Age at interview:

33

Sex:

Male

Age at diagnosis:

31

Background:

Aley is an administrator. He is single and has no children. Ethnic background: Pakistani.

I’ve started having this skin problem from April, May last year and I started complaining about that as well. And they didn’t take any action until last month when they have taken the sample of my skin and they sent it over and then that’s how they found out that I’ve got a chronic GVHD. And they sent me to the dermatology department, which is in another hospital, and the doctor has advised me to go through a treatment called extracorporeal photophoresis, which is a blood treatment with the UV light. So what they do, they take out your blood, put back the red cells immediately, and the white cells – lymphocytes - they treat with UV light and then they put them back. It’s a treatment done every two weeks for two days for six months in each year. And then hopefully, that’s the safest treatment, otherwise you have to take other tablets or cream or steroids or whatever, which is not very ideal.

Oh, I’m looking forward to that… The same thing is happening with my skin right now. It’s getting quite irritated but I’m hoping that the treatment will sort it out and it will be… They say that after treatment some people are very happy than others so probably I can get my colour back, which I have a very beautiful colour you know. And all my hairs, my skin is not supporting them, so all my hairs are falling off as well from my body, not my head, and so I hope to have them back as well. So hopefully in six months time I’ll be better than today.

So is your GVHD skin thing, is it like a rash? Does it itch?

It’s not like, you can say it’s like a rash. It’s just it’s very dry and it’s all over the body. It’s like a spots thing, like a cheetah, so I’m two different colours. In one inch you have got a darkened skin and the second inch you have a lighter skin, so it’s like that, dark and light, a contrast on the whole body. And because I had the full body irradiation and the chemotherapy it does get affected on your skin area. You do get a very, very tight skin and very, very dry skin. But on top of that because of the GVHD it’s my lymphocytes, I think, the white blood cells which support the skin are not working, so that’s why it is very itchy. Rashes, it’s not red rashes but it’s two different colours, dark and light. That’s what it is, but apart from that it’s not a very big deal, but I can’t stretch it. Now I can’t do exercise because then it hurts. I can’t go for swimming as well because I can’t stretch my hands. So it’s getting tighter and tighter around my body. It’s shrinking, so… But I’m starting the treatment in January so hopefully by the summer I’ll be able to wear sleeveless or short sleeved shirts. But right now I can’t do it because it shows off.

Do you put anything on it?

I do, I've used all the creams available on the market. All the creams, expensive to economical, whatever. The only thing I’m using is Deprobase, which is not even working. It gives me a relief for hardly ten, fifteen minutes. It’s a very, very greasy cream but it’s not working. The dermatologist gave me a steroid cream but when I put it on for a week I felt more uncomfortable so she asked me not to use it, so I stopped using it. Apart from that, that’s the safest treatment, you can say, and otherwise you have to be on steroids, and steroids have got their own side effects, you know what I mean, so you’ll become a shocker for side effects. You don’t know what’s happening, kind of thing.

Fatigue often persisted for a long time after treatment. Elsa learned to listen to her body to gauge how active she could be. Deb found it helped to counter fatigue with exercise rather than rest. Some people caught an infection and had to return to hospital for treatment (see ‘Infections and other treatment complications’). Aley still gets occasional pain from an earlier episode of shingles. Elsa continues to have strokes due to her thrombocythaemia. Others had deep vein thromboses (blood clots). John noticed that if he strained himself during exercise it took longer for aches or injuries to recover. Frances has developed arthritis and poor liver function. Some people explained that if they felt at all unwell they might worry that the leukaemia had returned. After reading an article about possible effects of imatinib (Glivec) on the heart, Chanelle had an episode of heartburn checked out.

Dianne is a retired HR director. She is married with no children. Ethnic background: White British.

And was it the case that you never felt well enough to go back to work, or what was your reasoning?

To be perfectly honest it was, I knew I haven’t got, I still don’t have the energy levels to do a full day’s, no to do a full week’s work. I mean I could probably on a good day get into town on the tube and go to work but the next day I’d be in bed. I mean there’s some days when I actually have to use sticks because my bones hurt so much, and yet to look at me today you’d think there was absolutely nothing wrong with me.

And I think that’s another thing, that’s another point actually that a lot of people with leukaemia will tell you that they look fine but they feel, I can’t say the word on camera, but they feel really bad inside because of this dragging fatigue. And to look at you, you look perfectly normal, absolutely nothing wrong with you, and again people have said to me, and I’ve found this myself, that the number of people who’d come in and say, ‘Gosh you do look well.’ And you’re feeling so ill inside, but outside, your face, you know, you smile and you look normal, you’ve got your hair back and everybody thinks you’re fine so they just bypass the fact that you’re still actually very ill. And it’s finding the way of getting that across really.

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Age at interview:

41

Sex:

Male

Age at diagnosis:

35

Background:

Mark is a voluntary charity secretary. He is single and has no children. Ethnic background: White Welsh.

My counts are very, very good at the moment. I was still feeling quite unwell, and one of my concerns was that - and it was a bit paradoxical – I’d go to the doctor and the doctor would say, “These counts are looking very good”, and then I would have to turn round and say, “Great, but I am experiencing this, this and this”. I began to wonder why it was perhaps that I wasn’t feeling better than I thought I should in relation to my counts, but that was because of a lot of other things. I didn’t know if that was because I was still suffering anxiety or some depression, which would then have a physical effect, which I knew was possible. But when I was diagnosed via a counsellor with the Chronic Fatigue Syndrome, which had been questioned prior to my ever being diagnosed with leukaemia which just goes to show how things go round about and how you can get confusing pictures, or confusing diagnoses, if you like. That did help to explain quite a bit, that who is to say what is causing, which ailment it is that I am suffering from. But even suffering from the Chronic Fatigue Syndrome on top of the leukaemia, I’ve got Irritable Bowel Syndrome, I’ve got lots of other health issues, it still doesn’t mean that you can’t keep going and do what you can to be positive about it.

Blood tests and check-ups were arranged at intervals starting from several times a week, gradually increasing to yearly. Some people had occasional bone marrow samples taken; Claire had regular chest x-rays after a fungal infection in her lungs. Some people who had spent long periods in hospital initially felt insecure about being away from health professionals. Some worried each time the interval between check-ups was lengthened. Although attending check-ups could provoke fears that tests might show a recurrence of the leukaemia, many people liked their hospital visits because they had good relationships with the doctors and nurses. Aley said the appointments got him out of the house and enabled him to talk about his feelings - he did not like to burden his friends. Ann said check-ups were a positive reminder of her leukaemia experience. Gilly found attending check-ups exhausting and time-consuming and regarded it as 'a job'.

Brian is a Research Consultant in the voluntary sector. He is married and has two adult children. Ethnic background: White British.

So the story so far is quite promising medically. But I don’t know how it’s going to evolve. What you do find is, when I first came out after the end of the fourth cycle, initially I was going back to the hospital two or three times a week to have tests, then it went to once a week and then it went to once a month.

You go through, I mean, the first month I was really, when it went to a month, I was really quite worried in that first month because I thought, ‘Heck’, I know how quickly it came up on me when I was first diagnosed, ‘There’s an awful lot that can happen in a month’, and, ‘What sort of state am I going to be in when I go back in a month? I don’t know what the counts are doing.’ So I’ve gone from having a count every day, or even twice a day sometimes, to suddenly having a count once a month. It can be quite worrying that. And as the day approaches you get more and more nervous about what you’re going to hear, because you don’t want to hear bad news, you want to hear the counts are still at least the same as last time, or up a bit.

When I went back after the first month my haemoglobin had gone up - good news - but for the first time my neutrophils and my platelets had gone down. They weren’t at serious levels, but they certainly had gone down and the platelets were really quite low. Consultant' ‘I’m not worried. This happens. Your counts will go up and down. You will probably live with low counts for a long time. It can take a year. It can take more than a year for your body to recover from what it’s been through with all the chemotherapy.’

And it gives you confidence for a few days but you still worry about it because I’m still not quite sure what’s going on. The best thing to not worry is to socialise, to meet people, to talk to people, to go out, to do things, to engage in all sorts of activities. And I found that helps quite a lot.

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Age at interview:

52

Sex:

Female

Age at diagnosis:

48

Background:

Elsa is a retired business owner. She is divorced with no children. Ethnic background: White British.

How often do you have to go and see your consultant now that you’re in remission?

Every six months. It’s wonderful. I’ve never had that before because it’s always been three weeks, every three weeks. So it’s just so lovely. So it was every month and then every three months and now six months is the next time, so fantastic.

What happens when you do go and see them?

I have my blood tested. I have a lot of blood tests. Although it’s just the one blood test there’s a lot of different cultures that she looks for. It’s a bone and the liver and a lot of other blood tests. And I go and see her and we have a lovely chat and I’m just so pleased. She tells me my results and then I come home and she always says how wonderful it is and she’s so happy that I’m in remission as well, because she’s a lovely person, a really lovely consultant. Yeah, and I’m so pleased.

So you get on well with her.

Yes, very, very well. I know that I would be able to phone my consultant any time if I needed to or worried about my health, which gives me a lot of confidence in her. The whole team, you know, I can say every ward that I’ve been in, every hospital has been wonderful, has been really good. Everybody is really, really good. They’re there to help, and that’s it.

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